SO I want to share bit with you why I do what I do…
Why I spend hours sending emails and collecting items for a silly auction. Why I spend hours baking lasagna’s to feed 150 people. Why I spend hours making programs, printing them, folding them and all that jazz. Why I spend hours begging friends family and complete strangers to pick up a torch and light a fire inside themselves to fight along side me…
Why I spend so much of my time starting things like this..
All these hours add up to days, months even years of my life. YEARS that are spent dedicated to something that not everyone understands. Something not everyone sees. Something not everyone believes. Yeah, that’s right… some people don’t believe that anything is wrong with my husband. Heck, no one thought anything was wrong with my father in law… yet he was literally days away from being plugged up to a machine because his kidney’s were completely failing him.
So yeah, I spend A LOT of my time devoted to this cause…why?
Hmm…. let me see if I can explain…
Do you know what it’s like to watch a strong man crumple in pain? what it’s like to know that a proud man is suffering? To know the man you love is literally dying inside but Joe Schmo over there doesn’t give him a break because he “looks fine”….I do.
I spent almost every day looking at our beautiful children and am buried in the disturbing reality that one day they will have to say goodbye to their father, but not before getting familiar with dialysis machines, transplant teams, blood pressure meds, renal diets, and lots and lots of lab appointments. They will watch him power through all of it with incredible strength and determination, they will probably be just as deceived as he was when he realized finally how incredibly sick his own father was (men are way too good at hiding their health problems). My children will grow up understanding about the surgery Papa and Mommy had together… in fact when our dog went to have surgery the other day my daughter asked if the vet took out his kidney too.
My children will understand the reality of this disease, but my prayer is they wont ever have to SUFFER the effects of it. Not only will they have to watch their Papa go through this, but their father; Daddy… No child should have to watch their parent suffer like that and know that one day they will probably have to go through it too. Part of me feels this has to do with why they “play tough” through it all. Maybe if they act like it’s not a big deal then you won’t scare your children that are watching you go through what they will probably have to go through… Ugh, my poor children.
Want to know WHY??
THIS, is why.
I don’t want my children to have to worry about their future, I don’t want my children to worry about their Papa or their Daddy…
I dont want to have to worry about my husband. I am tired of being so far apart from the man I love, who doesn’t even understand 100% what’s happening to him. A man who I know is scared and would give anything to not have to hurt anymore, to not have to be facing major surgery in the future simply to prolong his life… a man who desperately wants to be strong for his family, strong for his kids and strong for his wife. I love him, so I worry about days like these when he’s alone, in pain and probably doesn’t know what to do.
Will he eat dinner? Will he check his blood pressure? Will he make sure to take his temperature and keep track of his symptoms??? I have to trust that he will, PRAY that this will pass as well and that tomorrow he will wake up feeling renewed. His body can only rejuvenate itself so many times before getting tired…
I dont want to have to worry about my children one day needing kidney’s as well and me being too tired, too old, or hell… not even around anymore to be able to advocate for them and help them fight this fight I know so well… My children should be able to be saved from any of this!!
The foundation knows what gene causes PKD, they have spent millions of dollars on drug repurposing and just recently received drug trial result with promising news! It is on the fast track to becoming approved as a first ever “treatment” for PKD. That is why we are saying a Cure WILL come in 2012!! We are so close! We are so close to finding the cure that will change our lives permanently!
My family fuels my passion and motivates me, but the idea of being SO close to a cure is what ignites that fire. HOW could I give up now, HOW could I ignore helping them at this point in the modern world….
So you wonder why I do all this?
OH yeah AND them 🙂